Monthly Archives: September 2014

The good news is that my skin is healing up well after my last flare up. I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells! My eyes are much the same and the opthalmologists are checking my eyes regularly.

Me a week ago

On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s! Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there! Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!

The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections. Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator. Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!

In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!

Oliver’s asked me to do this week’s blog as he’s feeling a bit poorly.

After last week’s visit to Rotherham for ECP Oliver seemed to be doing well and we managed to wean his oxygen down last weekend. We even managed to enjoy a few cuddles and Oliver was able to sit up and play for short spells.

Enjoying a nice cuddle

During Sunday Oliver’s skin got progressively redder as the day went on and he spiked a temperature. Overnight his skin blistered on his face and neck with new rash appearing on his leg and we knew his GVHD was back.

Oliver being cheeky and trying to get his sats probe

On Tuesday Oliver went to theatre for a dressing change and also to have a new hemo-cath line as his was playing up but struggled with his breathing when he got back to the ward so was quickly assessed by PICU and taken back to PICU and put on a ventilator so we decided to make sure we were all together so Paul and Ella came over after school and Ella had 2 days at “hospital school”.

At the same time we were told by Dr Hartley that as Oliver’s GVHD was flaring up again we only had one more option for treatment and that was campath.
We had been told about campath before and were very reluctant to let Oliver have it as it has a lot of nasty side effects but our main concern was that it would wipe Oliver’s immune system completely leaving him without any defence against infection. When campath had been mentioned before we had other options with steroids and mesenchymal stem cells but as these had not had any real effect we decided campath was our last option to try and so on Wednesday Oliver had his first dose of campath. Thankfully he did not develop any side effects and we expect him to have a further dose or two next week and hopefully this will stop the GVHD attacking his body until he can resume ECP.

Back on PICU again

Oliver went back to theatre again on Friday to have his dressings changed and was also seen by the opthalmologist who was concerned that his left eye was deteriorating because of GVHD so he is now having ointment in both eyes every hour to try and help. Oliver’s skin is now very sore and raw in several places so he’s sedated to keep him comfortable and also to keep him from trying to pull his ventilator tube! We had hoped to get Oliver extubated this weekend but he’s needed more breathing support and we’re hoping he doesn’t have a chest infection.

Well, I’ve been here almost a month now and I have no idea when I might be able to go home.

My GVHD seems to be under control thanks to three lots of mesenchymal stem cells but my skin is healing very slowly so I’m still needing pain relief and oxygen. I’m on a lot less than I was though and hopefully in the next week I can manage without.

Managing a rare smile

As I have been so poorly I couldn’t get to Rotherham for ECP and Birmingham don’t do it. Yesterday though me, Daddy and Monica the nurse went for a day trip to Rotherham via ambulance and providing I stay well I’ll be able to go twice next week. It would be a lot easier if Birmingham Children’s did ECP and Mummy emailed the CEO of the hospital this week and the big bosses are now talking about it, so hopefully it’ll be soon! ECP is the only thing that’s going to cure my GVHD so it’s really important I get it.

On my way to Rotherham

I’ve seen the opthalmologist quite a few times because my eyes are really sore and dry. He thinks the GVHD is being controlled and I have loads of ointments and drops but they’re still too sore to open most of the time, so I just do lots of sleeping as I can’t really play!

I do have some good news though, and that’s that last week I managed to get upto full feeds via my NG tube so I finally got rid of my NJ. Mummy and Daddy were so pleased as they used to worry I’d pull it out at home.

What a sorry state I am!

Ella went back to school on Thursday so Mummy and Daddy are having to take it in turns with one of them with me and the other at home with Ella. It’s rubbish and I want us to all be together!